To Improve Emergency Response, the Syndromic Surveillance Community Sets Clinical Definition for ‘Disability’

older woman with headwrap embraced from behind by younger medical professional

A disability1 is any condition of the body or mind (impairment) that makes it more difficult to do certain activities (activity limitations) and interact with the world (participation restrictions). Like everyone, people with disabilities need healthcare and health programs to stay well, active, and be part of their community.2 Pandemics and other public health emergencies challenge these basic needs.

The COVID-19 pandemic highlighted disproportionate impacts among those living with disabilities. Changes in surveillance practices and data collection, exchange, and reporting would help inform ways to address these impacts.

CDC’s National Syndromic Surveillance Program (NSSP) is best known for providing near real-time surveillance data from emergency departments (EDs). CDC is working to integrate NSSP’s ED data with other surveillance data already being collected to better understand the range of COVID-19 impacts and new and innovative ways to detect emerging health threats.

In 2021, health scientists with CDC’s National Center on Birth Defects and Developmental Disabilities initiated a collaborative project with the NSSP Community of Practice and the Association of State and Territorial Health Officials (ASTHO). The goal of this project is to gain a better understanding of what people with disabilities experienced during the COVID-19 pandemic and to build public health capacity for monitoring the health and well-being of people with disabilities before, during, and after public health emergencies.

People with disabilities are a diverse demographic who experience health inequities and discrimination,3 yet disability status is typically not included on medical records. To identify ED visits by people with disabilities, the underlying health conditions that are associated with “disability” must be identified in clinical terms. An example is the diagnostic code for intellectual disability recorded in health records. Querying electronic health records for clinical terms related to disability can identify ED visits made by people with disabilities and their reasons for seeking care.

For this collaboration, CDC and ASTHO will convene a scientific panel of subject experts, including people with lived experience with disability, to craft the query.4 CDC and ASTHO will also engage the NSSP Community of Practice, which includes community members with training in data analysis, informatics, health science, and epidemiology. These community members validate electronic health record queries using real-world data and share findings during regularly held community meetings.

After the definition for disability is created and the query developed and validated, a few approaches will be used to encourage acceptance of the query into surveillance practice:

▪ Members of the NSSP Community of Practice will share pilot-tested information broadly with their peers and healthcare organizations and partners.

▪ ASTHO will create a user guide summarizing how the query was created.5

▪ ASTHO will disseminate and promote the use of the definition description and conduct educational outreach on the importance of collecting disability data to inform emergency response.5

Public health must meet the needs of people with disabilities, especially during an emergency. Data will be used to inform and develop intervention strategies that better match the needs of people with disabilities with the appropriate interventions. Data will also be used to improve national, state, and local capacity during emergency preparedness, response, and recovery.

1. Disability and Health Overview | CDC
2. Disability and Health – People with Disabilities | CDC
3. Dunn DS. Understanding ableism and negative reactions to disability: Engaging in critical thinking can be helpful in altering beliefs and avoiding ableist conclusions. American Psychological Association [Internet]. 2021 Dec [cited 2022 Aug 11]. Available from:
4. The terms query and syndrome definition are often used interchangeably. A syndrome is a group of related symptoms that, combined, can indicate a specific health condition, disorder, injury, or threat.
5. Association of State and Territorial Health Officials (ASTHO). Brief: Defining Disability for Syndromic Surveillance [Internet]. 2022 Jun 13 [cited 2022 Aug 11]. Available from: Defining Disability for Syndromic Surveillance | ASTHO